I follow the "Spoonie" website and saw this about brain fog, a common ailment for those with diseases like Lupus, Chronic Fatigue, and MS. I felt a little emotional reading the paragraph on fatigue (this is ME!) and knowing others are experiencing what I go through.

Fatigue is one of the main causes that result in brainfog and let’s be honest….when was the last time that you felt really rested? I’m guessing if I asked for a show of hands, I’d see one or two of you reaching high. The rest of us would sit quietly. The sad truth of the matter is that Spoonies never get enough sleep. We never get enough sleep because we never stop hurting.Oh sure, sometimes the pain can be dulled to a low roar, but it never goes away. Imagine waking up in the middle of the night because you have to use the bathroom. Most of you would jump up, go in the bathroom and then happily jump back underneath the covers and drift off back to sleep. Not Spoonies. Nope, we fight to open our eyes that feel like they had been rubbed on with sandpaper for the last hour, slowly roll off the mattress as if our limbs were frozen and useless. Eventually, we make it to the bathroom only to return to bed and turn on the tv…knowing full and well that there would be no more sleep to be had for the rest of the night.

(emphasis mine.) And then she makes me laugh, actually and truly, laugh out loud. While I do not have much of an issue with insomnia (relative, of course--I still have times as she describes, but more so when I first hit the sheets, completely exhausted and yet wide awake), the rest rings so true. So when I'm not 100% there with you, don't take it personally--I'm giving you what I've got, but MS got the rest of me. (That's why MS is my bitch!)

Footnote: if you are new here, Spoonie is a person who lives the Spoon Theory.

Tuesday, September 28, 2010

189. Breakfast was a small bowl of Raisin Bran with milk and sugar. I took Greek yogurt with kiwi berries and strawberries. I had a few bites but it was gross; I added sugar and tried a few more bites, but it was still gross. So I had a pluot.

For lunch, I went to Miracle Mile Deli to satisfy a beef craving. I had brisket on a kaiser roll with french fries and a regular root beer. I had two banana laffy taffys later.

For dinner, I was planning on halibut but M wasn't excited about it. We ended up having fish sticks and Velveeta shells and cheese. I also had an iced tea. I took my evening meds with some Good Belly beverage.

I was running late to class and everyone was paired up already, so we got to work alone, with some help from D. Cassi and I started out a little off. She went through the tunnel but missed the weave entries, but we were able to correct it. The first exercise was a jump to a tunnel to a weave, back around over the jump, through the other end of the tunnel (front cross) and back into the weaves. Our next exercise was with 2 sets of 6 weaves with jumps between. The entry to the second set was like a U from the jump. I was stepping into her line of sight for seeing the first pole but we got corrected again. Then we worked on the 3 poles and Cassi was looking at me for her treat bag (which she is getting very excited about playing with and shaking now), so D started throwing it after the third pole, working on getting her to turn her head close to the pole. So that's our homework. The other half of that exercise was the weave-o-matic and she had no problem at all.

D and I talked about next steps after this series of classes ends. It seems that we will continue Weave classes but she will be considering moving me to a handling class at some point. It sounded like novice. I explained Cassi's teeter issue and she said it's okay to use our homemade teeter, but I should use some weights on it so she gets used to the pivot always being different. She has open practice Monday through Thursday and thinks we might benefit from a private session followed by practice either there or at home. I'll need M and dad to make sure the teeter is in appropriate shape for use.

Monday, September 27, 2010

When I worked closer to home, I used to drive home at lunchtime to let my dogs out and eat a quick lunch. Fairly often, I would lay down and rest my eyes while listening to TV; sometimes I dozed off. I didn't have a fear of oversleeping as the dogs would occassionally come in to check on me. This article talks about the general benefits of napping. I took a 2 hour nap yesterday and obviously needed it after the last week of unpacking and cleaning and so on, but it did take a little time to get going again. Those 20 minute lunchtime "eye-rests" really did the trick for me. I know a woman who takes her shoes off and naps under her desk. If anyone sees her shoes, they know she'll be under her desk for a few minutes. I may have to try that in my office (I can bring my yoga mat in to lay on) so I can make it through these long days and longer commutes.

I haven't been reporting and I'm not going to try to go back to remember! Today is the first day of my monthly visitor, so I'm bloated and feel yucky. Breakfast was Cascade Fresh strawberry yogurt (the big container, not the little fruit on the bottom container) with banana and Grape nuts. This was my fourth time eating this breakfast.

At lunchtime, I was having cramps, so I went to Wildflower for tomato soup and a half Chicken Pesto sandwich on 9 grain bread, with ice tea.

I went grocery shopping on my way home so I just made ravioli (Fresh & Easy Spinach and Ricotta) for dinner. I attempted an artichoke but it didn't cook well. I finished the last serving of chocolate pudding with whipped cream.

Tuesday, September 21, 2010

Still grabbing breakfast on way to work--need to get unpacked and organized: Starbucks protein plate (2 apples slices, 10 grapes, hard boiled egg, 2 small pieces of cheese, and some kind of biscuit, and peanut butter) with a small pumpkin latte (skim milk, no whipped cream--BTW, they don't use whip cream on lattes at Dunkin or Dutch Bros.)

With the big breakfast, I wasn't too hungry and expected to get home early so I thought I would just have Jamba juice: small strawberry something and low-fat blueberry muffin

I didn't have a key for the house and M wasn't there, so I went to Bashas and got a chicken salad sandwich on multi grain with lettuce and tomato; ate about a half bag of Lay's BBQ kettle chips (yeah the big one) and half a jar of Tejava (I was thirsty and had no water with me, and it's unsweetened.)

It was quite a rough day, a lot of pain until late afternoon, emotional meltdown when I couldn't get in the house or get in touch with M. Just seemed things weren't going my way, for anything, no matter how big or small. I guess that's my Tuesday Tirade!

There was only one other dog in class, so D paired us together and we got her full attention. We worked on the 3 poles--Teka is still being rewarded for turning back around the second pole. She took some reminding and it's only been a week since we practiced. (I was moving--I haven't set up the poles at the new house.)

Monday, September 20, 2010

This was my quarterly visit, so I saw Dr M first. I was in a lot of pain today, coming and going, but it was starting to be more go than come. I think my vision was blurrier than usual, just a little. The balance tests he does after the eye test--he had me re-do them at the end of my visit. I was in less pain then, so I think I did better.

Dr. G made his comment again about losing weight will help with my pain issue. Just shows that no one is listening to me. Hello, this issue started when I was thin and recently diagnosed. Yes, I do need to lose weight, but I don't think we are all on the same page here. He also asked about my sleep patterns. I'm trying to change them with the move, but last night, after I got home from work (I had a meeting till 6, got home near 7), M made me go to Home Depot, fed me at In N Out, and then took me to the old house to clean. Between exhaustion and my general emotionalness, I was crying by the time we left. I went to bed around 12:30. Dr. G did not like that time! I am trying to go to bed earlier and only getting up a little earlier than before. I know that sleep is a factor in weight gain or lack of weight loss.

The research center went pretty smoothly. Lots of vials of blood, but N did a great draw. The entire process from Dr. G through the research center took a little over an hour and a half. I think that I will need to take 2.5-3 hours away from the office every quarter for this, including drive time.

Saturday, September 18, 2010

Long day, 2 moving trucks, 4 guys (and us and M's parents), not everything made it to the new house yet, but the cats and dogs did. The cats went in my car--M forgot to leave room for them in the truck and that I have no A/C. Jill was drooling and Kachina was panting. Then Jill started licking Kachina on the head and back of her neck. Later, when we let them out of the laundry room at the new house, Kachina looked like punk rock kitty. The dogs settled right in. This place is a mess!

Thursday, September 16, 2010

started the day feeling alright but that didn't last long. About a 6 all afternoon.leftover jambalaya for breakfast with vanilla milklunch with boss: BLT salad with balsamic dressing, small roll, turkey chili soup, and jasmine green ice tea (the soup and tea were great, the salad was blah, although the bacon was yummy.)Hungry cause I had salad for lunch! Kashi go lean bar (yep, they still suck), 2 banana laffy taffy and an orange mint LifesaverMahi-mahi with spicy sweet dry rub and potatoes and zucchinichocolate pudding with redi whip

Sunday, September 12, 2010

I spent today at the new house. I cleaned out all the cabinets (using Seventh Generation all-purpose spray cleaner) in the kitchen and bathrooms as well as a couple of hallway closets and the pantry. I lined the pantry shelves and unpacked most of the stuff that has been moved already. It's exciting to see things coming together. The tile is done, the painter has started, the electrician was there all day and is finished with his pre-move stuff, and M and dad are getting close to done with their big project. Quite a few workers will be in and out of the house this week. We still have a few things to schedule though. I'm trying not to stress out. But I'm stressed out! I have 5 days to finish packing. Everything. With my normal schedule of work and dog class and stuff. Almost done.

Saturday, September 11, 2010

Today I completed a NARCOMS survey called Patient Decision Making. It included some of the normal questions but had more interesting questions about taking drugs with certain hypothetical side effects (such as death) with different probabilities. For example, would I take a drug that would cure my MS if there was a 1 in 1000 chance I would die that night; if no, what if it was 1 in 10,000, etc. Some were to reverse disability rather than cure MS. They also used Tysabri specific examples for questions, since that drug is associated with PML (potentially fatal) but is potentially the most effective drug for MS right now. I guess they are trying to determine how desperate we are!

Thursday, September 9, 2010

Okay, I don't really like the title "Humiliation Diet" although it made sense when I started. But I know that I'm just writing this for myself, so how is it humiliating? I may go back to Spark People eventually and just use the blog for the food log instead of the time consuming food input. But for now, I'll share here.

Today: 190, and a lot of pain the first half of the day--did NOT cry. somehow.

Mini-wheats and milk

low sodium V8

Wildflower pick 2: half chicken pesto feta sandwich on 9 grain and chicken gumbo (I was really hungry going in, but once full, I saved half my soup for later and ate it in the late afternoon.)

2 banana laffy taffy

peach

chicken with kickin chicken spice (too hot for me, I only had a small serving) with red potatoes and zucchini (I used too much basil oil) and green ice tea

The size on the tag is a starting point for what to try on--this is what women have dealt with for years. I was recently shocked to purchase a pair of shoes in a size 9. I haven't worn size 9 shoes since I was in high school. I currently wear 3 different numbered sizes of clothes. I generally consider the largest size the "true" size. How can this be? It is known as vanity sizing.

Men are subject to vanity sizing too. It never occurred to me since men's pants are sized in inches. I bought a pair of 5.11 pants and they were sized in inches, whether women's or men's. I think I tried on 5 pairs before I got down to my size. It was the first time I bought pants sized in inches in many years. When waist size is considered an indicator of health issues, should clothing manufacturers be able to mislabel pant sizes?

After appointment: Chick-fil-a 8 nuggets, waffle fries and unsweetened ice tea; I was going to have the Polynesian sauce but realized after the first nugget that the ingredients included HFCS (first ingredient) so I had the honey mustard instead

I went to the endocrinologist's office today to review my latest blood test (TSH) results for my thyroid. The T3 is down from 8 to (I think it was) 1.9, which she said is very good. She said the T4 was within the norm but was on the edge so we'll see what it looks like in a few months and I'll continue on the medication as is. It's too soon to retest the Vitamin D. She mentioned that I should consider a B complex with some other stuff that I forgot already but I didn't really understand why. So my next ultrasound and blood work will be in January.

Teka started with the channel weaves, about an inch open; the purpose is to close them. I ran with and sent and called and she was very bouncy, especially on the call and send. I think I make her nervous when I run with unless I run ahead of her, which I've started doing with Cassi to get her to go faster. I've been babysitting Teka through the weaves for so long, I have to break this habit!

Next we did the weave-o-matic to work on focus by using toy torture. We played tug with her "rabbit" toy beforehand and she actually did really well ignoring it for several runs until it was very close and then she popped out and grabbed it.

Next we worked on the two pole exercise, clicking as she turned her head around the second pole. We are now working on distance and my homework is to get her (and Cassi) to 15 feet, with the four positions in the 45 degrees, basically 3:00 to 6:00 and back, with her on both sides of me.

Last, we worked on a sequence in a circle. It was a jump, 6 weaves, tunnels, 6 weaves, jump. D told me to STOP CHEERLEADING, which is going to be very hard since I've been trained to do this with her to keep her going. She said to think about doing a problem while someone is constantly in your ear saying yes that's it, yes that's it, over and over. So NO clapping or let's go, etc. Hmmm, we'll see how that goes. Teka does seem to be gaining some confidence.

Today was our first time at a coached run through. There is a fun run on the other side of the facility, where people were running dogs on a standard course without any coaching. The run through is essentially a jumpers course with some extras (a tire, tunnel, chute, and weaves) but no contact obstacles. The course had 17 obstacles, starting with the tire, chute, jumps, and so on. Cassi and Teka each ran 3 times, alternating with the other two pairs running the course.

With the tire being the first obstacle, Cassi's tire issue was on display right up front. For the 2nd and 3rd runs, D had me work the tire (low) with Cassi a couple times, then start the course at the chute instead. After "class," we discussed Cassi's structural issues--I know that she kicks up with her back feet and kicks the tire on top. D says that Cassi is hyper-extending her back too, which is not good for her. Anyway, she said we should work on getting her to put her head down more when she jumps and it will improve (not correct) her jumps. She showed me how to use a low jump to direct her head down by giving her a treat lower than the bar as she goes over and comes back around. By keeping her close and treating low, she will learn to turn in the air and lower her head. She worked with Cassi, who is very food motivated, so she had to sit before every jump.

I also learned with both of them to treat by my thigh when they come into my side (and I want them to). There were 3 places we practiced this. The first was when we had jumps in a U, and after the second, I needed to front cross to bring her back around the jump 3 after taking it to take the jump 2 the other way. Then we sent out to a jump, brought back over a jump, and wanted her to essentially wrap the jump to go to a tunnel. After coming out of the tunnel, she had to come over a jump at an odd angle before going into the weaves.

Teka did really well on the weaves the first time, hesitated the second, and skipped a few near the end on the last try. Now that I've started running out ahead of Cassi on the weaves, she is doing really well. Pretty good overall.

D also talked about lining up the "dots" (tape wrap or stripes) on the jumps and pointing at those. She pointed out that I pointed higher on a jump so they both went over expecting to continue in that direction; by pointing lower, they both collected more afterward for the turn.